Testing Fate: Tay-Sachs Disease and the Right to be Responsible draws upon a range of historical and contemporary ideologies surrounding genetic decision-making and eugenics in order to critically examine the intersection between medical and professional diagnosis and cultural notions of racial and social difference and diversity. Arranged into three parts, the book analyses pathologising the other, imag(in)ing difference and paradoxical bio-citizenship in an attempt to guide the reader through historical contents and socio-political debates specifically surrounding Tay-Sachs disease, a rare and debilitating hereditary condition and childhood disease believed in the late nineteenth century to almost exclusively afflict Jews.
Building on the work of numerous disability activists such as Judith Butler (Citation1993) and Rosemarie Garland-Thomson (Citation1997), to name a few, Reuter seeks to analyse and explore how disease, as a concept, can be racialised as a defining marker of difference. In doing this she explores the role of the visual and medicalised gaze in constructing difference and diversity as a pathological other to be eradicated. As such, by theorising and decoding disease classification as a cultural process, Reuter effectively illuminates a genetic surveillance and medical racialism which places disease and disability within a broad context in which difference and diversity is historically constructed as a deficit and racialised other and a threat to the broader population. It is this medicalised gaze and cultural process of interpreting, classifying and deploying disabled people which highlights normative expectations that systematically understand and frame disease and disability as significant markers of difference, a tragedy to be avoided at all costs.
In examining the parallel history of not only Jewish immigration to Britain but the evolution of disease as a deficit, Reuter highlights how in the age of bio-power individuals were, and are, defined in terms of medical and genetic discourse. It is this classification of disability as a disabling disease which not only complicates the notion of autonomy and choice within medical genetic decision-making, but also (re)enforces the notion that disability and perceived difference is solely an abnormality or medical pathology which should be prevented, equating disability and difference primarily with social and political death. It is this collective mapping of the body, used to objectify and reduce disability and difference to a major social problem, which consequently suggests that the reach of the medical gaze is constructed and deployed upon historically specific standards of normality and pathology, a social and cultural construction meant to control.
Equally, it is this unethical (132) view of disease disability, or eugenicist assumption, where exclusion of non-normative or abnormal bodies (Butler Citation1993) becomes rationalised as a matter of pathological or even dangerous biology, which systematically contributes to the marginalisation and discrimination of disabled people. This is where the widespread embracement of genetic screening becomes constrained by the continuous inculcation of normative ideas of what constitutes a responsible body and bio-citizen. As such, these classic tropes used to offer a medical narrative are not only discursive and historically contingent, but intersecting with a narrative social order that defined the discourse of disease also highlights a politics of resentment surrounding difference and diversity which consequently serves as a justification for a bio-political othering process and modernised social Darwinism.
To conclude, Reuter offers a critical, thought-provoking and comprehensive examination of both the history of Tays-Sachs and its systematic construction as a disease or disability to be eradicated. As such, Testing Fate is something that firmly locates disability and disease within a multidisciplinary nature and should therefore be read not only by healthcare providers but also by scholars and professionals from a variety of professional fields and disciplines. Equally, with the increased availability and modern developments of predictive genetic testing and screening, it is critical that disease and disability, as a concept, are redefined and understood in western cultural term as social and political constructions, and simultaneously products of history and social relationships regarding exclusion, power and inclusion. Without this recognition that medical and genetic decisions are not only culturally made but socially imposed, modern society and culture runs the risk of resonating and reflecting historical and bio-political periods within a modern-day eugenics’ movements and selected infanticide.
Department of Disability Studies (Inclusive Practice), University Centre at Blackburn College, Blackburn, UK
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References
- Butler, Judith. 1993. Bodies That Matter: On the Discursive Limits of “Sex”. New York: Routledge.
- Garland-Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press.